Descriptive analysis of free-text comments on healthcare priorities and experiences in a national sample of people with multiple sclerosis

Abstract

Background: People with multiple sclerosis (PwMS) often require care from multiple healthcare services and providers to fulfill their physical and psychological healthcare needs, including those related to their MS and those due to co-occurring disorders. However, they often experience barriers to accessing healthcare specialists, providers, and services. Objective: The purpose of this study is to understand patients’ healthcare preferences, perceived importance of elements of their care, and encountered barriers through analyzing patients’ free-text comments. Methods: We used content analysis to analyze 7105 text responses. Results: We recruited 3,003 participants with MS across the U.S. Of those, 82.9% were females. The mean age was 58.49 years (a range of 18–96 years). The participants self-reported their MS course as relapsing remitting (54.8%) or progressive (30.0%). The healthcare professionals most frequently identified as being most important to PwMS included neurologists, physicians/general practitioners, and physical/occupational therapists. Commonly identified barriers to accessing healthcare included the high cost of healthcare services, insufficient health insurance coverage, limited mobility, and transportation. Approximately 36% of respondents expressed a preference for receiving care from a comprehensive MS center, an MS research center, or an MS specialist as their main healthcare provider. Regarding priorities for improving healthcare quality, about 10% of participants stated that healthcare professionals should focus more time and attention on communicating, consulting, and understanding patients’ needs and questions. Conclusion: PwMS prioritize accessibility, affordability, insurance coverage, and comprehensiveness in MS healthcare services.

title = "Descriptive analysis of free-text comments on healthcare priorities and experiences in a national sample of people with multiple sclerosis",

abstract = "Background: People with multiple sclerosis (PwMS) often require care from multiple healthcare services and providers to fulfill their physical and psychological healthcare needs, including those related to their MS and those due to co-occurring disorders. However, they often experience barriers to accessing healthcare specialists, providers, and services. Objective: The purpose of this study is to understand patients{\textquoteright} healthcare preferences, perceived importance of elements of their care, and encountered barriers through analyzing patients{\textquoteright} free-text comments. Methods: We used content analysis to analyze 7105 text responses. Results: We recruited 3,003 participants with MS across the U.S. Of those, 82.9% were females. The mean age was 58.49 years (a range of 18–96 years). The participants self-reported their MS course as relapsing remitting (54.8%) or progressive (30.0%). The healthcare professionals most frequently identified as being most important to PwMS included neurologists, physicians/general practitioners, and physical/occupational therapists. Commonly identified barriers to accessing healthcare included the high cost of healthcare services, insufficient health insurance coverage, limited mobility, and transportation. Approximately 36% of respondents expressed a preference for receiving care from a comprehensive MS center, an MS research center, or an MS specialist as their main healthcare provider. Regarding priorities for improving healthcare quality, about 10% of participants stated that healthcare professionals should focus more time and attention on communicating, consulting, and understanding patients{\textquoteright} needs and questions. Conclusion: PwMS prioritize accessibility, affordability, insurance coverage, and comprehensiveness in MS healthcare services.",

T1 - Descriptive analysis of free-text comments on healthcare priorities and experiences in a national sample of people with multiple sclerosis

AU - Chiu, Chungyi

AU - Park, Mirang

AU - Hoffman, Taylor

AU - Campbell, Monica

AU - Bishop, Malachy

PY - 2019/9

Y1 - 2019/9

N2 - Background: People with multiple sclerosis (PwMS) often require care from multiple healthcare services and providers to fulfill their physical and psychological healthcare needs, including those related to their MS and those due to co-occurring disorders. However, they often experience barriers to accessing healthcare specialists, providers, and services. Objective: The purpose of this study is to understand patients’ healthcare preferences, perceived importance of elements of their care, and encountered barriers through analyzing patients’ free-text comments. Methods: We used content analysis to analyze 7105 text responses. Results: We recruited 3,003 participants with MS across the U.S. Of those, 82.9% were females. The mean age was 58.49 years (a range of 18–96 years). The participants self-reported their MS course as relapsing remitting (54.8%) or progressive (30.0%). The healthcare professionals most frequently identified as being most important to PwMS included neurologists, physicians/general practitioners, and physical/occupational therapists. Commonly identified barriers to accessing healthcare included the high cost of healthcare services, insufficient health insurance coverage, limited mobility, and transportation. Approximately 36% of respondents expressed a preference for receiving care from a comprehensive MS center, an MS research center, or an MS specialist as their main healthcare provider. Regarding priorities for improving healthcare quality, about 10% of participants stated that healthcare professionals should focus more time and attention on communicating, consulting, and understanding patients’ needs and questions. Conclusion: PwMS prioritize accessibility, affordability, insurance coverage, and comprehensiveness in MS healthcare services.

AB - Background: People with multiple sclerosis (PwMS) often require care from multiple healthcare services and providers to fulfill their physical and psychological healthcare needs, including those related to their MS and those due to co-occurring disorders. However, they often experience barriers to accessing healthcare specialists, providers, and services. Objective: The purpose of this study is to understand patients’ healthcare preferences, perceived importance of elements of their care, and encountered barriers through analyzing patients’ free-text comments. Methods: We used content analysis to analyze 7105 text responses. Results: We recruited 3,003 participants with MS across the U.S. Of those, 82.9% were females. The mean age was 58.49 years (a range of 18–96 years). The participants self-reported their MS course as relapsing remitting (54.8%) or progressive (30.0%). The healthcare professionals most frequently identified as being most important to PwMS included neurologists, physicians/general practitioners, and physical/occupational therapists. Commonly identified barriers to accessing healthcare included the high cost of healthcare services, insufficient health insurance coverage, limited mobility, and transportation. Approximately 36% of respondents expressed a preference for receiving care from a comprehensive MS center, an MS research center, or an MS specialist as their main healthcare provider. Regarding priorities for improving healthcare quality, about 10% of participants stated that healthcare professionals should focus more time and attention on communicating, consulting, and understanding patients’ needs and questions. Conclusion: PwMS prioritize accessibility, affordability, insurance coverage, and comprehensiveness in MS healthcare services.